Does anyone have neuropathy related to MGUS?

Or even a third or fourth I have MGUS with many symptoms. Some doctors say it's not the MGUS. Some say it's possible I get no clear answers. I have severe neuropathy. Extreme fatigue. Trouble with low blood pressure and can't control my blood sugar . And no answers

I have a burning in my right foot. My doctor tested me and said I had neuropathy. This blood test also showed another problem. Dr sent me to an immunologist who ran tons of blood tests. This is where the MGUS showed up. I was then referred to a hematologist who follows me. So the neuropathy lead to the MUGUS diagnosis.

My PCP attributes my neuropathy to Diabetes (type 2 A1C of 6.8 well controlled by Metformin). She did refer me to podiatrist who said, “yes, neuropathy.” Then referred me to an orthopedic foot surgeon who turned me on to some very cool tennis shoes which he swears by and wears himself. (HOKA highly recommended… I bought two pair. I love them.) I was hoping, however, for a more permanent solution. So the orthopedic surgeon referred me to a different podiatrist, who recommended some metatarsal pads. She said I was beginning to get contraction in my toes. Wow. It just keeps getting better. Pads give me no relief, by the way.
But to get back to your connection between MGUS and neuropathy… My neuropathy started right before I was diagnosed with MGUS. It does seem highly coincidental. My hematologist/oncologist poo poos my suggestion that the two might be related. It seems that if you have a diabetes diagnosis that is the go to connection.
It is frustrating that medical professionals just seem to encourage one to live with neuropathy rather than to find some legitimate treatment for it. It keeps me from being as active as I want to be and although there are some days where I feel like I have no energy at all, most days I want to get out and do things. It’s difficult to travel and go on walking tours, etc. when your feet hurt every time you take a step. Additionally, I get these random sharp pains in my toes and feet that are annoying. Sometimes they take my breath away.

I wish that there was some magical remedy for neuropathy and if anyone finds something out there, I am more than interested.

I was diagnosed with metatarsalalgia for extreme pain in the right foot I do have neuropathy from previous chemo on the left foot. In the summer I will have Vionics flip-flops. When I first had the pain a podiatrist recommended bionics and I also bought shoes I was wearing pads for the metatarsal ultra, but lately I don’t have to wear them I wore them almost 3 years! The pain on the right side was beyond excruciating. Also have that pain in my jaw bone. And I wonder if that’s related to MGUS?

I was diagnosed with metatarsalalgia for extreme pain in the right foot I do have neuropathy from previous chemo on the left foot. In the summer I will have Vionics flip-flops. When I first had the pain a podiatrist recommended bionics and I also bought shoes I was wearing pads for the metatarsal ultra, but lately I don’t have to wear them I wore them almost 3 years! The pain on the right side was beyond excruciating. Also have that pain in my jaw bone. And I wonder if that’s related to MGUS?

The first orthopedic guy I went to see diagnosed me with metatarsalgia. He prescribed that I wear a boot to extend my Achilles tendon and charged me $300 for the boot to alternate between my aching feet. I found the same boot… The exact same boot on Amazon for $29.99. Needless to say, I protested the charge and never went back to him. The boots did nothing to alleviate the pain anyway.
I then saw a podiatrist who was quite nice and put metatarsal pads in all of my existing 45 to 60 pairs of shoes. That did exactly nothing. I continued to have pain and numbness in both feet.
My PCP (in frustration) sent me to an orthopedic surgeon who said my feet were “quite good“ and I should go see another podiatrist.
I went to the only other podiatrist with whom I could get an appointment within the next six months. She prescribed metatarsal Pads that provided some stability for the toes so they were really sleeves that went over my front part of my foot. That has provided very little relief.
The one thing that I did get out of my appointment with the orthopedic surgeon was the recommendation for a brand of tennis shoes, which I have now noticed , so many of the medical professionals I have appointments with are wearing with their scrubs. They are the most comfortable shoes that I own, and have provided more relief than the orthopedic shoes that I purchase.
The biggest drawback for me with the foot pain is that it limits my activity. I no longer volunteer to take grandchildren to the zoo or go on any 6 mile marches with my friends and husband. It’s really changed my lifestyle. If there’s something that I really want to do. I just push through the pain and do it but it’s not high on my list of fun things to do.
So my only counsel would be to try these tennis shoes. They are very comfy. Not a cure, but help.

Patty

I knew they were going to be Hokas!
I need to get me some…

Hello @paris2099, Welcome to Connect. I'm happy to see that you have already connected with @pmm and @momsys. There are many members with MGUS who have shared their experiences on Connect in different MGUS related discussions. The search function on Connect is great for helping you find other members with similar symptoms. Here's a list of the search results for MGUS using the search box at the top of the Connect page:
https://connect.mayoclinic.org/search/?search=MGUS.

You mentioned have pain in your jaw bone. Searching for MGUS +jaw pain found 6 posts that may be helpful - https://connect.mayoclinic.org/search/?search=MGUS+%2Bjaw+pain.